Parent Suportal

Shared from the fab Peeps - HIE

Little Journey has been commissioned by NHS NICU teams to create a support app for parents-to-be and parents with children on the NICU wards. This support app aims to help families throughout their whole journey from arrival through to going home (and beyond if further support is required).

The Little Journey team are currently in the design phase of the project. They have worked with some parents and NICU staff in the East of England NHS hospitals, but want your help and opinions, as HIE families, on the app they have created so far to make sure the solution will really work for parents.

The application features interactive virtual tours of the wards and rooms, explanations of equipment and procedures, all alongside articles, checklists and contact information for support services.

The workshop will be on Friday 8th July, 12.30-14.00 over Microsoft Teams. Find out more about Little Journey here: www.littlejourney.health

If you would like to have your say, please get in touch via messenger or email [email protected] and we'll send the joining details.

Welcome to Little Journey Little Journey supports children and their families before, during and after healthcare interactions, reducing anxiety and improving health outcomes

Needs Assessment v Carers Assessment

Great post again from Contact - For families with disabled children

You are to ask and be assessed. Your needs and that of your child are important.

Please don’t fall into the thought process of ”my child isn’t as severe as X and we’re ‘coping’ so we will leave it”. 🙏🏼

We hear this far too often! If you don’t ask and there isn’t a demand on services they won’t get funded! So by asking you’re doing everyone a service.

You also don’t need a diagnosis to ask for a needs assessment!

💛

Parent carers of disabled children in the UK have a right to ask for their family's needs to be assessed by social services through a Needs Assessment and a Carer's Assessment.

Here are some of the key differences between the two — but you'll find a lot more information in the links below, including template letters that you can use to ask for either assessment.

🔹 Needs assessments: contact.org.uk/needs-assessments
🔸 Carer's Assessments: contact.org.uk/carers-assessments
🔹 Parent guide (England): contact.org.uk/la-services-guide
🔸 Challenging a refusal to assess: contact.org.uk/making-a-complaint-about-services

Who finds this hard? 🙋🏼‍♀️

It’s different for everyone I’m sure.

Answer the questions asked about your child or don’t.

Educate random Joe or politely say ‘mind your own business’.

I’m going to start exercising the later. What’s your thoughts?

💛

“We don’t talk about their medical information with people we don’t know” should be the standard response to nosey (even if they seem well-meaning) strangers who ask about a disabled kids medical stuff.

At 42 years of age I am STILL working on this for myself when strangers come and ask me about why I’m in a wheelchair. I still feel uncomfortable putting my comfort before their discomfort. I still feel like I’m being rude not answering even though actually they’re the ones being rude.

It’s so important to model this boundary for kids. To show them that they can choose who they tell and who they don’t. That just because their lives involve a lot of medical appointments and medical talk that doesn’t have to extend outside of medical settings.

To show them they don’t have to spend their whole lives feeling like a public medical curiosity and a constant teaching moment.

Jase was out with Clark once and another parent and kid came over and the parent said to Jase “Is it ok if I ask about his leg brace?” and Jase said “No it’s not” (never loved him more) It’s not that it’s some big dirty secret but come on what do you think it’s for? It helps him get around. You don’t need to interrupt his day for that.

Let Disabled kids be kids, there’s plenty of us adults doing the educating and also Google exists for a reason and look I’m Queen of polite I hate being rude but not answering some strangers question about your kid isn’t rude. It’s showing your kid you’ve got their back and teaching them that their comfort will always come above a strangers discomfort.

ID: A picture of a small fair toddler wearing dungarees and a stripe top and using a green walking frame. They’re standing in front of a silver airstreamer.

Has this been your experience?

Is your child due to start in Sep and another layer of barriers has got them/you second guessing?

Ask Jules is a great resource too.

Anything you’re looking for we can signpost you too!

💛

University shouldn't cost more if you're disabled - but it did for me.

💛 Happy HIE Day 💛

This year to celebrate they have released a song Heard of HIE? 🎤

🎧 Listen here: https://bit.ly/3DBn8x9

Peeps - HIE are the incredible charity behind this song and so much more! They support parents, families and friends affected by this birth condition.

Hypoxic (lack of oxygen 🌀)
Ischaemic (restricting blood flow 🩸)
Encephalopathy (affecting the brain 🧠)

3-4 in every 1000 babies are affected by this condition which can cause various levels of brain damage. It can be a common cause of

Let us know what you think of the song and share this post to create more awareness. ☺️

💛

🥊 Myth Buster 🥊

It is FALSE that you are only entitled to apply for for a disabled adult.

Contact - For families with disabled children have some incredible information on this.

1️⃣ Take a look

2️⃣ Apply

3️⃣ Don’t believe everything someone in authority tells you.

There is a subtle effort to divert parents from resource they are entitled to.

💛

Carer's assessments: your needs as a carer | Contact On this page, we discuss; asking for a carer's assessment, young carers and other relatives, and what happens after the assessment.

🚨The SEND Green paper is important for every SEND parent/carer🚨

As always I.P.S.E.A are the go to for all things educational law related. Be sure to have your say during the consultation period.

There’s a lot to absorb in the SEND Green Paper – and a lot to be concerned about. We’re still carefully reading the proposals and looking at how these fit with the current legal framework, and will produce a detailed analysis soon. In the meantime, a few things jump out:

▪️ Reference to local decision-making and 'local discretion', requiring national standards to fix. Local authorities may think they have discretion, but existing law is clear – that’s why local authorities lose so consistently at Tribunal. Applying the law should be priority, not creating new structures.

▪️ Assumption that increasing number of Tribunal appeals demonstrates parents’ ‘frustration’ with SEND system. No: it demonstrates unlawful decision-making by local authorities.

▪️ Proposed amendment to process for naming school in an EHC plan. This appears to be led by what already exists in local area rather than what child’s individual needs might be. By what method will local authorities produce tailored list of options – and how many options will there realistically be?

▪️ Making mediation mandatory and making it harder to appeal to Tribunal. Lots of problems with this. But if ministers want a less adversarial system, they need to find a way of making sure the law is followed in every area, for every child.

To add:

Thanks everyone so much for these comments – we are taking note of them all. IPSEA will be preparing a detailed response to the consultation on the proposals in the SEND green paper, and we also encourage you all to submit your own response so the Government knows what you think. The consultation runs until Fri 1 July, so there’s plenty of time. Details of how to respond can be found at the link below, and we will also be putting information about it on our website shortly.
https://consult.education.gov.uk/send-review-division/send-review-2022/

💛 World Autism Acceptance Week💛

This week, (28th March - 3rd April), is

Let's list some positive traits of 👇

💜 March 26th: Purple Day for 💜

The idea for this day came from Canadian eight-year-old Cassidy Megan, back in 2008. She wanted to help raise awareness for those with and make sure they don't feel alone! was given it's name given that is the colour of lavender, which is internationally recognised when it comes to representing epilepsy!

Purple Day is now celebrated in over 100 countries across the world.

Anyone can celebrate this day - whether they have an association with epilepsy or not.

So why not sign up for Epilepsy Action's free purple pack to get started:-
https://buff.ly/3gSeVKG

💛 : Epilepsy Action 💛

As tomorrow is for , we have decided to feature an . This time it's Epilepsy Action! 💜

Take a look at their social media, and site, to find out more!

👏🏻 513 new Changing Places UK to be built 👏🏻

This is incredible news!

Let us know where you would love to see one and where you would recommend going because they have one!

We’re delighted to share the news that everyone has been eagerly awaiting: theresults of applications for a share of the funding from Department of Levelling Up, Housing and Communities have been announced!

£23.5m worth of funding has been allocated across 191 councils and will see 513 new Changing Places toilets installed across England, meaning toilet accessibility for those who need Changing Places toilets will be vastly improved in these areas.

The remaining £6.5m of the fund will be allocated to local councils in a further round later this year and will focus on areas where there is little or no Changing Places toilet provision.

Read more and find the full list of awardees on the DLUHC site:

https://www.gov.uk/government/publications/changing-places-fund-allocation-of-funding-following-round-1-assessment

Better late than never… 👏🏻👏🏻

This should be taught in schools!

We will keep our eyes peeled 👀 for any resources and courses that come up to share.

Feel free to tag us in anything too 💛

British Sign Language set for legal recognition A bill requiring public bodies to promote sign language is backed by MPs.

📣 FREE EVENT 📣

Birth to 5 Matters online event looks like it’s going to be a great one!

Get signed up! 🪧 And let us know any of your highlights!

💛

A fantastic range of speakers in this FREE online event from Birth to 5 Matters Sign up for sessions here birthto5matters.org.uk/spring-festival/ Update 30/03 - You can watch the recorded webinars for free on YouTube until May 31st - www.youtube.com/playlist?app=desktop&list=PLzkw-lv-oIY3W_gJP8fJpa7fZxIiAwMeh

⚠️ Blame the parents NEVER the ‘system’ ⚠️

Sound familiar?

Have you read the Local Government Association’s latest publication? 🤯 Here at Parent Suportal it’s ruffled some feathers we don’t mind admitting! 😡

Tania Tirraoro Special Needs Jungle (SNJ) hit the nail on the head with her article title:

‘LA’s: SEND failings are everyone’s fault but ours and it’s too easy to get an EHCP’.

Here is the situation as we see it…

❗The Children and Families Act and the SEN code of practice are clear on what support should be provided.

❗Local Authorities (LA’s) regularly implement unlawful policies but unfortunately SEND parents are unaware of this most of the time. This was one of the findings of a select committee report (link below).

❗The result is many children are being failed by a system that is supposed to support them.

❗Those that are aware of the law and ask for the LA to meet the needs of their child are labelled as ‘pushy’. They often have to goto tribunal. It is very telling that LA’s lose 96% of the time.

❗If LA’s can’t follow the law or fund SEND provision including EHCP’s then government needs to intervene rather than blaming parents for asking for help for their children.

❗At the moment we are calling ourselves a civilised society because we support those children most in need when the reality is life being made much harder for many of these children.

What to do?

SEND parents get educated on SEND law by:

👊🏼 Reading the SEND code of practice. I know it’s not the most exciting prospect but you will be glad you did.

👊🏼 Visiting the I.P.S.E.A website and familiarising yourself with the procedures for different situations. Attending one of their parents courses if you are able to.

👊🏼 Talking to other SEND parents who have experience. There is a wealth of knowledge in our community!

👊🏼 Contact your MP if your LA is not following the law.

Let’s not forget that the more we support these children now the better their long term outcomes. Early intervention is key!

Tell us your SEND education experiences in the comments. ��💛

Full report: https://bit.ly/3hZpsEs
SNJ article: https://bit.ly/3t4Lqw5
Select Committee report: https://bit.ly/3I3eisA

⚠️ 29% of students receive DSA ⚠️

Are you a disabled student or know someone who is?

Let’s close this gap and ensure disabled students get the support they need. 💪🏼



https://www.theguardian.com/society/2022/mar/10/just-29-of-students-in-england-with-disabilities-receiving-dsa-allowance-analysis?fbclid=IwAR2DhQ_e48EyPp8541DHUJMdD9FcX0J2P2A-fNumS6K9igHU6kuAKu-6Lig

Just 29% of students in England with disabilities receiving DSA allowance – analysis Students complain of bureaucracy and delays when applying for disabled students’ allowance

Use this template to write to your Local Authority if you’re waiting for amendments to be made.

I.P.S.E.A are the go-to organisation for all things legal and Education. 📚

Let us know if you use it and how you get on. Rooting for you all. 💛

Great news for this family!

But is this for the ? This should never needed to have gone to court.

Having disabilities should not be a barrier to accessing life saving medical intervention.
Assumptions should not be made and denying him the potential for a long life due to a potentially complicated, yet feasible with the appropriate adjustments in place, recovery.

Have you ever experienced this?

💛

Lancaster mum wins legal fight for son's kidney transplant A judge rules the 17-year-old should be given the chance of a potential life-saving operation.

💛 International Women's Day 💛

Here are some of the MANY phenomenal disabled women kicking ass in life! 👩💪🦸‍♀️

Social media is such a powerful tool, especially with regards to how it impacts our mental wellbeing. Are you looking to fill your feed with more inspiration, motivation & positivity - and fabulous feminine energy?
Take these women as just some suggestions to get you started!

Wheelie Good Life
Samantha Renke
Sophie Morgan
Kadeena Cox

👏 Monday Motivation 👏

We love to see positive, uplifting posts - like this one - on social media! 🤩

Congrats to Todd & well done to Coles Scaffolding Contractors LTD for recognising potential and being open to inclusivity in their opportunities, making employment more accessible to the disability community. 💛

📰:- Metro

Man set to become first fully qualified scaffolder with Down's syndrome 'If you know him, you'll know that he loves what he does.'

👁️ March 6-12: World Glaucoma Week 👁️

❓ DID YOU KNOW ❓

👀'Glaucoma is a chronic, progressive, degenerative disorder of the optic nerve that produces characteristic visual field damage.'
👀It is irreversible.
👀 It's the second biggest cause of blindness.
👀 Approx. 50% of the 80 million people worldwide with glaucoma are not aware of it: most patients have zero symptoms.
Catch the disease early and you have a great chance of preserving your vision for the years to come. (https://www.worldglaucomaweek.org/)

You can find more information at World Glaucoma Week 💛

💜 Forget-Me-Not Walk 💜

Today, Sunday 6th March, is Grief Encounter's forget-me-not walk.👣

Walk in memory of a loved one & raised funds for bereaved children, young people & their families.

Some of the beloved families, whom we have had the privilege to meet via our sister company, Blue Skies Neuro, have children that have gained their wings. 👼💙

So we are especially aware of the importance & significance of events like these. 💛

This is going to be great! 💚💚💚

💚💚 COMING SOON 💚💚

This picture book is dedicated to children diagnosed with Cerebral Palsy. Perfect for teachers, parents and children alike, this book will bring awareness of the condition and teach children how to be supportive and be kind.

This book is inspired by Louie's Pace - A Warrior's Tale and friends.

Written by Gemma Keir
Illustrated by Yevheniia Lisovaya (Jenny)
Produced by Bear With Us Productions

🙏💚 We will have this book released this month for Cerebral Palsy Awareness Month 💚🙏

The abilities in me Foundation
Reg charity no: 1197965

💛 UPCOMING EVENT 💛

Disabled Adventurer, Expedition Leader & Speaker, Darren Edwards, is a paralysed former Army Reservist & mountaineer.

At this event, Darren will share his personal story of overcoming adversity and building a resilient mindset, which is guaranteed to motivate, encourage, change & inspire!
Instilled with humour, down-to-earth honesty and a genuine sense for adventure and pushing the limits of his disability, Darren’s talk will be an infectiously positive call to action that nothing is achieved without a resilient mindset.

📆 Thursday 10th March, 10-11:15
💸 FREE
📌 University of Chester, Parkgate Road, CH14BJ
To book this event:- https://buff.ly/3gGZTXQ

📱DOWNLOAD OUR APP to stay up to date with more Events & 'Spots':- app.parentsuportal.com

👂🏻 World Hearing Day 👂🏻

In the UK, there are around 11 million people with hearing loss - partial/total inability to hear in one/both ears; 50,000 of these are children. (UK Health Security Agency Blog)

📷:- Photo by TH Team from Pexels

💛 Lent: 40acts Generosity Challenge 💛

With Lent, many may associate the act of giving something up.
How about we instead?
By performing daily generous acts, you can keep your beloved chocolate 🍫, make yourself happy, and see others smile, too! It's a win win 🤝

As members of this community too, we especially know how much it means to experience/witness generosity. We're not only particularly inclined to be givers, but we're also so grateful to receive. ♿️

So why not take the challenge this year? 🤩

40acts Stewardship

40acts - the Lent Generosity Challenge from Stewardship More than 5million acts of generosity in 180 countries worldwide. Celebrating 10 years of the 40acts Lent Generosity Challenge!

💛 PCA Annual Conductive Education Conference 💛

📆:- 19th March
📍:- Online
💷 £30 (10% PCA member discount)

Professional Conductors' Association - UK - Conductive Education

2 international plenary speakers:-

1️⃣ Professor Robbie O’Shea, from Chicago, who has a long association with conductive education and is an honorary conductor. Robbie will be presenting on “A new way to classify movement abilities: using movement systems diagnoses classifications”.

2️⃣ Dr Carolyn Blackburn, from Birmingham City University, who will share her expertise in a presentation called “Networks of the Mind: Possibilities and Pathways for Human Potential”

Alongside these speakers there will be a number of presentations from conductors and those working in CE giving an exciting day ahead.

PCA Annual Conference registration | 19 March 2022 - Everywhere+ PCA Annual Conference on Conductive Education 19th March 2022 “Learning is a process where knowledge is presented to us, then shaped through understanding, discussion and reflection.” (Paulo Freire) We are really pleased to announce two international plenary speakers: Professor Robbie O’Shea, ...

💛 March is...Brain Tumour Awareness Month 💛

Launched in 2004 by a group of charities who went on to become founding members of Brain Tumour Research 🧠

This March, Brain Tumour Research are leading the way with a programme of activities, in order to demand increased nationwide investment into finding a cure.

From fundraising and campaigning, to raising awareness or simply quietly reflecting, there are lots of ways that you can get involved to acknowledge this month.

One example is Wear A Hat Day on March 26th 👒
So get your thinking caps on 🧢 a-head of this event - and get creative!

Source:- https://www.braintumourresearch.org/brain-tumour-awareness-month

💚 March is...Cerebral Palsy Awareness Month 💚

The 25th of this month is National Cerebral Palsy Awareness Day - as the colour is green, wear something green on this day to help raise awareness of this disability!

It's estimated that 30,000 children in the UK have CP and approximately 1,800 children are diagnosed every year.

We know of many remarkable children & young adults with Cerebral Palsy via our sister company, Blue Skies Neuro 💙

Who do you know/love with CP?
Or do you have Cerebral Palsy yourself?

♿️ International Wheelchair Day ♿️

Currently, there are approximately 1.2 million wheelchair users in the UK alone; 2/3 of whom are regular users (NHS).

In honour of this day, take a look at our poster below, offering some suggestions of companies providing different wheelchair-related services, from customisations & accessories to funding & servicing...and more!

👩‍🦽 Davinci Mobility
🎒 Complete Care Shop
👕 Optivus
🦽 Izzy Wheels
💷 Steve Morgan Foundation
🔧 Ross Care